Faithfulness Amidst the Storm

On November 14, of 2022, I got a phone call from Phoenix Children’s Hospital that would forever change our family. We were told that we needed to come to the hospital the next day, on our middle son’s 8th birthday, with bags packed and ready to stay for at least 5 days. They weren’t able to give an official diagnosis over the phone, but we didn’t need them to. We knew what it meant. Tucker, our 6 year old, had cancer.

You see, we had known for a few months that something was very wrong. We had started seeing unexplained symptoms nearly a year before. Tucker started having trouble pronouncing words, sounding nasal, and blinking hard too often. He started having pale spells, extreme exhaustion, and weight loss. He had a stuffy nose that continued to worsen until he was unable to pass air through at all, and was having extreme mucus discharge. We had tried all the natural remedies and mainstream medicines. We had been to doctor appointment after doctor appointment, but had gained no answers. We, and many others, had been praying for direction and for answers, as we simultaneously watched our son’s health decline.

After many, many appointments, we were finally referred to ENT. Though it wasn’t the ENT office that we had hoped for, the Lord placed us exactly where He wanted us. It was this ENT who noticed what was going on, and acted quickly. From day one, when the ENT could not get through the nasal passage, he did not skirt around the fact that it could be cancer. He quickly ruled out nodes and scheduled a scope in which Tucker would be put asleep, to see if there were any polyps blocking his nose.

As I sat in the waiting room at the outpatient surgery center, I felt utterly helpless. Our little boy was back there, after a tearful departure, undergoing a procedure that I feared would not result in a favorable outcome. Friends were texting, asking for updates, letting us know that they were praying and reminding us that the Lord would remain faithful, no matter the outcome. But as I sat there, in a room full of strangers, I couldn’t hold back the tears.I felt as though I was breaking.Though I hadn’t voiced it yet, I finally admitted to myself that I was terrified of what the Lord might be calling us to.

As the “quick” scope began to take longer than expected, my stomach began to turn. I was pleading with the Lord to protect our little boy and to give us strength. I tried to remind myself that I might be overreacting. After all, it was only a procedure taking a bit longer than normal. But when the doctor came to get me, I could see it on his face. The scope had turned into a biopsy. He explained what he had seen and that he was very concerned. I left the outpatient surgery center, putting on a brave face for Tucker, but inside reciting Phil 4:6-7 over and over. I prayed the whole way home, telling the Lord all of my fears and begging Him for His peace. Over the next few days, we clung to Matthew 6: 25-34, “Do not worry about tomorrow”, as we prepared to wait up to 2 weeks for biopsy results.

The ENT scheduled a CT quite quickly after. We tried to remain hopeful. Hopeful that there was some other explanation, other than a cancerous mass. Focusing on reassuring Tucker and our other 4 children of the Lord’s goodness and sovereignty was an easy, and much needed, way to continue preaching truth to ourselves. When we arrived for the CT it was pretty light hearted. The tech told us that she would show Tucker his scans after. But, as she asked some very pointed and concerned questions after, and then led us away without showing the pictures, I once again realized just how serious this may be. Once again, the pit grew in my stomach, a physical reminder of my inward struggle with fear.

It took an unusually short amount of time to receive results from pathology. The initial results showed “abnormal tissue”. When the ENT called us with the results, he let us know that he had already sent the sample and the CT to Phoenix Children’s Hospital oncology department. There was no denying it anymore, the likelihood of this “abnormal tissue” being benign was very small. We felt mixed emotions. We were seeing the Lord clearly directing our path and answering our prayers. From a proactive doctor, to swift tests, and timely results. We were incredibly thankful for that. We were seeing His faithfulness in the smallest of details. But His answers were not heading in the direction that we were hoping for and we were scared.

Our worst fears were confirmed by one short phone call. I was in complete shock at what was taking place.The whole world seemed to stop. My mind and body felt numb. Our sweet, little boy, who had turned 6 a mere two months before, had cancer.

Oh, the number of thoughts and questions that then began to race through my mind and heart. How could this be? How advanced was it? What kind of cancer was it? What did the future hold? Why us? Why him? He didn’t deserve this! We had known that this was a very real possibility, but my entire being wanted to reject it. I wanted to run, to scream, to hit something, to hide. It simply couldn’t be. How could God allow this when we, and so many others, had been praying so fervently against it? Why was He calling us to this? I wanted answers. Within a moment’s time, it seemed that we had stepped into a horrible nightmare that wasn’t just a nightmare, it was now our reality.

I called my parents, sobbing, and thankfully, they were able to jump on the next available flight to come help watch the kids. And so, the next morning, with our whole world seemingly crashing down, we begged the Lord for peace and strength and left for the hospital. We arrived at PCH feeling numb, not knowing what to expect. We didn’t know what was before us. We didn’t know what the future would hold. What we did know was that this was the path the Lord was, undeniably, leading us on. And though we were scared, we were confident that, even in this, the Lord would remain faithful.

At the hospital, we were told that Tucker had a rare form of cancer: Rhabdomyosarcoma. Not only was it a rare type of cancer, but it was in a rare location as well. He had a solid tumor about 2” by 2” in size, residing in his sinus cavity and completely blocking his nasal passageway. Because of the location, we were told, it was inoperable. We were informed that our treatment plan would consist of immediate chemo. Chemo would last for approximately 16 months, with a 6 week treatment of radiation, a few months in. The goal was that at the end of treatment, his tumor would shrink enough that he could breathe again, and that he would be considered cancer free. And with that, our journey through pediatric cancer began.

We stayed in the hospital for a few days, just as they said to expect. It was a brutal first week. Robert, my parents and the rest of our sweet kids stayed in an airbnb right next to the hospital, with the intention that Robert and I could go back and forth, and I could go nurse our 2 yr old, who was not weaned yet. We expected it to be a tricky situation. What we didn’t expect was that all four of the kids would get incredibly sick while at the airbnb, with high fevers. Not only had our son just been diagnosed with cancer, and suddenly become immunocompromised, but our whole family was a walking risk to him. You know the saying, “when it rains, it pours”? Well, it was pouring. And the floodwaters were rising. But, even in these brutal first days, blessings were undeniable. Friends, coworkers, and churches rallied to meet our needs, to encourage us and support us. While we felt like we were in the depths of despair, the Lord was using them to show us that He had not left us there, nor forgotten us.

I’ll never forget that first hospital stay. Robert had encouraged me to journal, to write out what I was feeling and also what the Lord was doing, as we walked this road ahead. I remember sitting on the window seat of the hospital room and just sobbing uncontrollably as I wrote, trying to be quiet enough that I wouldn’t wake Tucker up from his sleep. It was all so much: so much information, so much to process, so much emotion. I quite possibly had every emotion possible running through my mind and body. And my emotions were colliding with what I knew to be true of God. Who He has declared Himself to be, through Scripture, and who He had proven Himself to be. I knew I was being faced with a decision. Where would I land? Would I trust my feelings, or would I trust my Savior. I wrestled. Boy did I wrestle. I cried hot tears as I surrendered not just my will, but our child, to the hands of our good, and faithful God.

Robert and I knew. There was no other way. When Christ called us to Himself, He didn’t promise the road would be easy. In fact, He promised that it would be hard (Luke 9:23). But He promised that nothing could separate us from the love of Christ (Romans 8:38-39). He promised that the momentary affliction in this life, is preparing us for eternity (2 Corinthians 4: 7-18). And we knew, without a doubt, that we could rest in His promises.

Even though we knew that this path was the Lord’s sovereign plan for our family, that He would be faithful and was trustworthy, it has been hard. No one can prepare you for the pain you will feel from your child being diagnosed with cancer. Not only were we reeling just from the news, but we were hurting so deeply from seeing all that our sweet son was going through, and being unable to take the pain away. We wanted to protect him. But we couldn’t. We had to face the reality that God wasn’t just calling Robert and I to walk this road. For some reason, he was calling Tucker to walk this road. And the rest of the family. And we knew that, somehow, He would use it for our good (Romans 8:28).

After that first horrible week, and as “treatment” began, we started to wrap our heads around what it might look like. Little did we know that our treatment plan would not end up looking anything like what they said. We were expecting a few months to get into the rhythm of chemo, with Tucker’s symptoms gradually intensifying. We were then expecting radiation to start around month 4 of chemo. Yet, the Lord had other plans.

It was only days after his initial chemo treatment that Tucker started saying that his eyes felt cross eyed. At first no one realized what exactly was going on. I reassured him that, no, his eyes looked normal. About a week later Tucker came to us, complaining of vision problems. And after a few days, we realized that Tucker had lost all of the vision in his right eye. An emergency ophthalmology appointment was set, and it was confirmed. Tucker’s right optic nerve was white. There was no signal. He was completely blind in his right eye.

It was decided that we had no time to waste, if there was any hope in Tucker regaining vision in his eye. The ophthalmologist was not very optimistic. But we were told that Tucker needed to start steroids and radiation ASAP, just in case.

It had only been three weeks since finding out that Tucker had cancer. It was the start of the holiday season, and instead of getting to stay in the comfort of our home as we faced the hardest season of our life, we were being uprooted. We found ourselves in shock once again. We wondered what in the world the Lord was doing. What else could possibly go “wrong”. How much more could we be stretched!? But as we started looking for airbnb’s that we could live in for the next 6 weeks, and as the Lord continued to walk before us, preparing the way and providing for our every need, we were reminded again and again, of his faithfulness and goodness. Though at times it felt like our world wouldn’t stop spinning, we knew that it wasn’t spinning out of control. God was still in control and had a plan, even if we didn’t know what it was.

So, just a mere four weeks after we received that first phone call, we moved down to Phoenix for Tucker’s second round of chemo, and his first emergency radiation appointment at the Mayo Clinic.

That first radiation appointment seemed even more terrifying than the first hospital visit, if at all possible. It was all so urgent. No one was prepared for radiation to start this quickly with Tucker. So they were all scrambling, trying to put together his treatment plan with accuracy, in the shortest amount of time possible. But because it was an emergency situation, we needed to start with x-ray radiation, which had a higher risk for long term damage. The list of possible side effects and long term effects were so much more severe from radiation than chemo. I couldn’t hold back the tears as the Dr. was explaining the risks, because of the location of his tumor, to me. I couldn’t believe what we were saying yes to. But we had no other option. We had to trust the Lord.

When we showed up for the first radiation treatment we found out that the radiologists were able to put together Tucker’s plan quickly enough that we were able to actually start the first treatment with the best case scenario:proton radiation. What provision from the Lord. He was still in control, directing even the doctors, to accomplish His plan. I held to that, as I was waiting for Tucker’s first treatment to conclude.

I couldn’t believe it when I heard a code blue being called for pediatric radiation. I knew that Tucker was the only patient being treated at the time. I saw the hospital staff running down the halls. Yet, there I was, basically trapped in the waiting room, once again, unable to do anything. As I fought the sheer panic inside, I just kept telling the Lord that I would trust Him. Over and over, until the code blue was called off. After Tucker was in recovery, waking up, I was able to confirm my suspicions. Yes, it had been Tucker. I was told that because of the location of his tumor, and the placement of his radiation mask, his airway had been blocked and he had stopped breathing. As horrifying as that was to experience, it was then that the Lord impressed on me, that it would only be by His will and timing that Tucker would be taken home. It could have easily turned out the other way, but this wasn’t the end of the story, it was just beginning.

After about 2 weeks of radiation, Tucker’s vision suddenly reappeared one night. Sitting in the living room at the airbnb, he exclaimed, “I can see out of my blind eye!”. The doctors attributed it to quick, successful treatment. But we knew it wasn’t just that. Even with treatment, the ophthalmologist had stoically warned us that Tucker’s vision may never return. We knew this was the healing hand of God. And we were so grateful. He has kept reminding us of His faithfulness, and this was just one instance.

It has now been nearly a year since Tucker’s diagnosis. Some days it seems like we received the news just yesterday, while other days it seems like it has been an eternity. So much has happened. I wish I could share it all with you. We could sit down and I would recount the ups and the downs, the struggles and the victories. There would be tears and there would be laughter. If I had space on these pages, I would walk you through each and every situation to show you all that the Lord has done. He has comforted, directed, and protected. He has sustained, encouraged, blessed, provided, taught, strengthened, and healed. He has opened our eyes to see more clearly who He is, who He has always been and always will be. He is loving, patient, kind, merciful, just, perfect in all His ways, trustworthy. He is all knowing, all powerful, unchanging.

I don’t have time to share all of the details that I want, but what I do want to tell you is that all throughout our journey, we have seens God’s unwavering faithfulness. He has been faithful even when we haven’t seen it. He has been faithful even as our own faith has failed. Never before had we wished to be in this place. Never before had we imagined it. Yet, it is here that the Lord has led us. To a place of utter surrender. Our story isn’t done yet. We still don’t know how it will end. But we know one thing for sure. He, Who has led us here, is faithful. And we can trust Him, no matter what comes.

1. What Scripture do you cling to on the hardest days and nights?

On days where we are prone to worry-

Matthew 6: 34- “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” ,
Philippians 4:6-7- “Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

On days where we have felt too weak to continue-

2 Corinthians 12:9- “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

On days when it seems that all hope is lost-

Romans 8:28- “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”
Psalm 42, specifically verse 11- “Why are you cast down, O my soul, and why are you in turmoil within me? Hope in God; for I shall again praise him, my salvation and my God.”

2. What hymns or songs comfort you?

The Lord has wired music within my soul. You can find lyrics running through my head and out of my mouth at any given time. Music has a unique way of connecting with and calming my heart. Some songs and lyrics that I have continued to go back to for encouragement through this last year have been “Oh, Lord, My Rock and My Redeemer”, “Jesus Firm Foundation” and “The Lord is My Salvation”.

More recently, I’ve been encouraged through the Psalms put to music by the The Psalms Project.

3. What have people done that has ministered to you?

Prayed faithful for us, and told us that.
Sent heartfelt cards.
Given financial support. As much as it is humbling to accept, it is a huge blessing and weight lifted off.
As a child who is going through chemo, the gifts that he has received in the mail, especially in the beginning, were incredibly encouraging. As well as the gifts given to the rest of the siblings. It has reminded them that they are not forgotten.
Intentionally talked about normal life things, as well as the diagnosis. I had a friend who said “I don’t want to ignore the fact that you are still you, even in the midst of this hard time”. That meant the world to me.
Brought meals. When people have said “I want to bring you a meal Tuesday, does that work?”, it has been an incredible blessing. Our church body has faithfully brought meals, while Tucker and I’ve been at the hospital, for the better part of this last year. It’s easy to bring meals the first few times, but as the need has continued, we have been especially blessed and encouraged through the body’s faithfulness to come alongside us. There was also a church, that we weren’t even members of, who came alongside us while we were living in Phoenix, during the 6 weeks of radiation. They checked in every week to see what days we needed meals. And they served us faithfully, being the hands and feet of Jesus. It was especially touching to see the extended body of Christ at work, asking nothing in return.
Sent groceries. Without making me decide on what to order.
Paid for a house cleaner to come on a set schedule, without my asking.
Looked us in the eyes and really listened, when asking how things are going.
Hugs. And that’s coming from a “non-hugger”. Physical touch is healing.
Played with our kids.
Offered, with a joyful countenance, to babysit the kids during our countless appointments. It’s easy to feel as a burden when you have to ask people to babysit every week, and every 3rd week, for 5 days in a row.
Babysitters who have clearly stated that they don’t want money, that they are doing it to bless us. It can be uncomfortable to accept help from others, and even more so if you aren’t sure where someone stands on payment. Because, even though we would be willing to pay each sitter, each week. After 1.5 years of 6-8 hr weekly appointments, that can add up. And it has been a huge blessing when people have been clear on their intentions.
Told us how the Lord has encouraged them through what we are going through. I can’t even explain how encouraging it is for us to hear that the Lord is using what we are going through to encourage someone else. It makes it worth it. It is a tangible way that the Lord is bringing good from an otherwise, quite horrible situation.

4. What should people not say or do to others in similar circumstances?

“Let me know how I can help”- This often gets said because someone wants to help but doesn’t know how. What they may not realize is that it puts the responsibility on the person, who is already struggling, to initiate the service of another person. If you have a heart to serve, jump in. Instead of saying “let me know…”, say “I would like to do XYZ, would that be helpful?” And then give some dates in which you are able to carry out that task. This takes the burden from the one who is most likely already overwhelmed and instead of the offer being a burden, the offer becomes a blessing. One thing that is helpful if you don’t know what way would be helpful to serve, is to ask, “What is one thing that is overwhelming for you right now”. Listen to the answer. And then, offer to serve in a way that helps with that need.

“Do you need me to come and check on you?”- When going through a trial, comments like this can make the sufferer feel burdensome. Instead, something like “I would love to come and sit with you. We can talk if you want or not at all. I can bring coffee/tea and a snack. Would you be ok with that?”, lets the sufferer know that they are loved and that it is not by obligation that you are offering.
“I’m sure that you have a lot of people checking on you, so I don’t want to bother you”- Don’t assume that someone else is checking in. I have been guilty of this many times in the past. But now we see that, while that may be the case in the very beginning, those check in’s quickly fade. And it can become extremely lonely. If you have the thought to check in, do so. You never know what kind of encouragement that may bring or how much they need to know they aren’t alone.
Try to avoid saying “how are you doing”, unless you are willing to really listen to what is going on. Though this is a very commonplace opening remark for conversation, it is a very tricky greeting to answer when going through such a difficult season.
Oftentimes, people think that taking the kids away from the house is a blessing to the mom. They may offer “Can I take your kids to my house?”. And some have been very confused when we’ve declined. But when you have a child who has been diagnosed with a life threatening disease, sometimes the kids leaving is the last thing that you want to have happen. For us, we felt a strong desire to be close and as a group in the beginning. Not just that, but Tucker was not able to go to friends’ houses anymore. So, instead of taking the burden away, it created a difficult isolation within our family. Instead, the offer of, “Can I bring lunch and watch your kids for a while so that you can rest if you want”, brought me comfort. It allowed for the kids to stay near, while giving me a few moments by myself if it was needed.

5. What hope has Christ given you in your trial?

Part of the struggle with cancer is having to face the fact that it has the potential to be a fatal disease. No one wants to think that their loved one could end up fighting so long and so hard, just to have their body be overcome by cancer. We most certainly don’t want to face that as a reality for our son. We continue to pray for complete healing, followed by a long and healthy life. But what has given me hope in the midst of the reality of what could possibly come to pass, and the fears that creep up all too often surrounding that possibility, is 1 Peter 1:3-9.

“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls.”

Christ’s gift of salvation is my hope. This world is not our home. It is tainted by sin and is being destroyed by the effects of sin. Death, destruction, and disease are results of Adam’s sin. Yet God made a way through Christ, so that we could receive forgiveness and hope eternal. And no matter what trials we face, nothing can take that hope away.